In this Discussion

npc stage 4b my story

Jaime Tourgeman added 5 new photos.October 27 at 3:36pm · Jaime TourgemanJuly 26 ·I have a story to tell you, that may safe someone's life some day. This rare cancer in America and most countries is diagnosed mostly at advance stages . Cancer doesn't shrink , this one wax and wane . It's very aggressive and sneaky . Most doctors are fooled because there are no symptoms and in most cases it doesn't show on blood, X-rays , hard to identify on Ct scan . They grow small but spread like wild fire . Most that get it, are from Asia or Africa , smokers , drinker and eat salty fish . I am not Chinese , don't drink or smoke and very seldom eat fish , yet 3 of my brothers were diagnosed with this rare cancer . 2 died and one is under treatment as I am.My primary doctor, DR. Carlos Luistro, suspected what I had even before it was diagnosed to be carcinoma . He saw my lymph node on my left side of my neck . They were firm and hard and putting my family history made him very concern . While all test were negative, he always remained concern. My ENT Noubar Ouzounian, made an exam that later biopsy was concluded to be cancer . Met with my radiation oncology, Dr Winston Lien, and with the use of scope , he Confirmed that I had advance NPC and it appears to be locally . Today I had the pet scan , and results with be available in 3 days . An agreesive cancer treated with agreesive chemo and radiation . This is where I am now . If it has spread, I have at most ??? years, if it has not spread , I could be cured . If you know someone that has enlarged lymph on nodes on your neck , dont delay seeing your doctor . The problem, most may not be able to diagnose it at early stages . Get second opinion. Soon I will have my treatment and will keep you updated in the months to come . I am confident I will be fine , but I hope by me sharing this, a life may be spare.I thank Dr Luistro and Dr Ouzounian for their Wisdom and experience for their urgency and concern..I am in great hands now with my Ocology Dr. Winston Lien .August 8th________________________________________________________Had my first cycle of chemo on 08/10 followed by 4 days with the pump. Had my ups and down with side effects . Today I feel fine . It takes 7-10 before chemo flushes out . Next cycle 9/1 and 9/21 I am getting the best of care from Kaiser Permanent hospital . So far I have not lost my hair and may not , good taste is ok so far but my hearing on the right side is 75% gone . Today I feel great___________________________________________________________Aug.22,2017Cancer spread to neck on both sides and above collar bone.Thats good. ( NO SPREAD BELOW THE NECK IS MUCH EASIER TO CONTROL ) Lost half of my hair and my taste is gone..most taste like carboard, water like sewer...But these are my least of my problems.___________________________________________________________10/1/17Today I had my second cycle of chemoSo far so good . Side effects have been minimum . Fatigue at times but other than that , feeling good . From so much liquid my stomach is blown . I think I gained 10 pounds but by tomorrow most will go away .Let's seeSept 10thHas been up and down recently , the more chemo the more side effects9/21 the last cycle of aggressive chemo , follow by radiation/ chemo-----------------------------Sept 12thSaw my ONC today . Was amazed how well I looked . With my aggressive treatment an elephant would come to his knees is what he said . I have one more cycle of chemo followed by 2 hours of chemo/ radiation every 6 weeks . Tumors have shrunk to almost normal , and that's good . I asked him to tell me what are prognosis ?His answer was very much appreciated .He said that my cancer is very rare in America and data is really not that complete or reliable . Most that are at stage 4b60 plus , died within 2-3 years of heart attack. Treatment do damages certain parts of your body . Since most died of heart failure , its not certain then how good data would have been . 70 % of my my age range and with my stage , cancer returns within 3 years . His advice ;Don't focus on the cancer or how long I am going to live, but rather on making each day count and fill the bucket list as if I was going to live another year .I am at ease, not concern with anything really . I have made my mind to do exactly what my doctor had said .To you I say , live and worry less . I also know that I am very lucky that 71 had seen the world and lived a full life so far . I am grateful that I am not 40 with little children to support while working , or a 6 years old child with this illness . I am ok . Being happy is an obligation to life even if you only have a couple . JaimePs today they did an ultra sound where my PICCIs located . Blood cloth was found . Picc was removed and replacing next week . A good9/29/17No treatment of chemo for the last 4 weeks . Feeling fine . The month of Sept and part of October was not easy . Chemo can do damages to your body. I had to go to urgent care 2 times , had two blood clots one on each arm due to PICC .Was rushed to KP hospital for 24 hours . Fatigue and low white counts , blood clots were a concern . Hours before my discharged , a very nice internal medicine doctor Spoke to me and basically said that at my age of 71, more treatment may be more harm than good . The aggressive chemo treatment, may have been too much. Gave me option I should consider , one to simply live the remaining time in comfort Rather than more treatment.. Most doctors have no clue about this rare cancer..I have stage 4b, but its treatable if it didnt spread. And it didnt..NELOW COLLAR BONE.Had my pet scan a few days ago , and tomorrow in the morning we will get the results . A very important day . Will continue with more information , tomorrow.10/27/17Met with my Rad. Oncology today, DR Lien... Good news....Tumors shrunked 90%.I will start 7 weeks of radiation 5 days a week and once a week 6_7 hours of chemo. Treatment will be brutal, with a few side effects, but this is the price you pay for life. I now have 70% chances of being totally cured if all treatments goes well..and It will.They were amazed how well I looked and how well I handle the treatments so far..For a 71, thats surprising. Anyways, I am getting, hopefully, a good chance for longer life.Good attitute, good diet, and excercise, are important.Remember, " Being happy is an obligation to life"._______________________________________________________-10/31Had a pet scan today and the mask. Treatment starts on the 14 of Nov . Chemo once a week and 5 days a week 7 weeks radiation . _________________________________________________________11/ 15/17Today , I resumed my treatments after a break of 5 weeks . Feeling super good .Today I had a busy day with 5.5 hours of chemo followed by radiation . All went well , I am reminded of some difficult times effects , just like when I had my 3 months off chemo . I handled it with minor issues . Hopefully this time I will do as well . Saw many nice people waiting to be called for their treatment. Young and old , rich and poor, all Ethnics And all Hoping to beat this bad illness . The young and married with little children, is what disturbs me most. Makes me feel lucky with no problems . Till further days./ Side effects normally appears after 4_10 days after the treatment.....not looking forward to that..One day at a time..Lookinf forward when its all over.Jaime

Comments

11/21/17had my main course of 5.5 hours of chemo and my desert of radiation. Doing very well so far. No side effects that medication cant deal with. Tumors have shrunked 90% and with additional treatment this may look even better. optimistic that I will be just fine.

11/21/17Had a long day today..6 hours of chemo and 10 minutes of radiation.Had my main course (Chemo) and my desert (Radiation).So far, no side effects, feeling well. And either unigue and strong or it will come in the near future, where some side effects will developed, as they expect. Nothing I cant handle..So far, all looking good.Have 30 more radiation tratment and 5 chemo.___________________________________________________________Ps there is a warrant for the arrest on cancer, the charge is "Murder"cancer of NPC - Google Searchhttps://www.webmd.com/cancer/nasopharyngeal-cancer#1No automatic alt text available.Image may contain: indoorImage may contain: one or more people, people sitting and indoorImage may contain: 1 person, closeupImage may contain: 1 person, smiling, selfie, closeup and indoorLikeShow more reactionsCommentShareTop Comments1 Linda McandrewsCommentsJaime Tourgeman

11/21/17Had a long day today..6 hours of chemo and 10 minutes of radiation.Had my main course (Chemo) and my desert (Radiation).So far, no side effects, feeling well. And either unigue and strong or it will come in the near future, where some side effects will developed, as they expect. Nothing I cant handle..So far, all looking good.Have 30 more radiation tratment and 5 chemo.___________________________________________________________Ps there is a warrant for the arrest on cancer, the charge is "Murder"cancer of NPC - Google Searchhttps://www.webmd.com/cancer/nasopharyngeal-cancer#1No automatic alt text available.Image may contain: indoorImage may contain: one or more people, people sitting and indoorImage may contain: 1 person, closeupImage may contain: 1 person, smiling, selfie, closeup and indoorLikeShow more reactionsCommentShareTop Comments1 Linda McandrewsCommentsJaime Tourgeman

11/21/17Had a long day today..6 hours of chemo and 10 minutes of radiation.Had my main course (Chemo) and my desert (Radiation).So far, no side effects, feeling well. And either unigue and strong or it will come in the near future, where some side effects will developed, as they expect. Nothing I cant handle..So far, all looking good.Have 30 more radiation tratment and 5 chemo.___________________________________________________________Ps there is a warrant for the arrest on cancer, the charge is "Murder"cancer of NPC - Google Searchhttps://www.webmd.com/cancer/nasopharyngeal-cancer#1No automatic alt text available.Image may contain: indoorImage may contain: one or more people, people sitting and indoorImage may contain: 1 person, closeupImage may contain: 1 person, smiling, selfie, closeup and indoorLikeShow more reactionsCommentShareTop Comments1 Linda McandrewsCommentsJaime Tourgeman

Thank you for sharing your story! Since 3 of you in one family have this cancer, do you know if there is a genetic mutation that causes it like with breast cancer? I knew a family with stomach cancer that is very rare and it turned out it was genetic. Now that the gene is known, the rest of the family can be tested and know their risk. I hope that your knowledge and your story will help others in your family know what to look for so that maybe no one else will have to suffer like you have. Good luck with continuing treatments. I'm glad to hear you've kept your strength up so well.

Today Feb 13 I met with my RAD oncology and treatments done it’s job. No cancer tumors were found . Great news . To make sure every 3 months a pet scan will be order to make sure it doesn’t reaper . Taste will take another 2 months before some will improve , life is good

11/21/17Had a long day today..6 hours of chemo and 10 minutes of radiation.Had my main course (Chemo) and my desert (Radiation).So far, no side effects, feeling well. And either unigue and strong or it will come in the near future, where some side effects will developed, as they expect. Nothing I cant handle..So far, all looking good.Have 30 more radiation tratment and 5 chemo.___________________________________________________________Ps there is a warrant for the arrest on cancer, the charge is "Murder"cancer of NPC - Google Searchhttps://www.webmd.com/cancer/nasopharyngeal-cancer#1No automatic alt text available.Image may contain: indoorImage may contain: one or more people, people sitting and indoorImage may contain: 1 person, closeupImage may contain: 1 person, smiling, selfie, closeup and indoorLikeShow more reactionsCommentShareTop Comments1 Linda McandrewsCommentsJaime Tourgeman